Phenomenon of sexuality in India is colored by several significant facets of its culture.[1],[2] The present communication focuses on challenges encountered during collection of data for a study on sexuality among women survivors of breast cancer. The study utilized a single group, cross-sectional, and exploratory design. A mixed-method approach was used with both quantitative and qualitative forms of data. Sample consisted of fifty survivors, and qualitative data were obtained from 15 out of the 50 survivors. Ethical approval for the research study was sought from the Institute's Ethical Committee Board of NIMHANS, Bengaluru, and St. John's Medical College and Hospital, Bengaluru. Participants were provided with information leaflet, and informed consent was taken from survivors before interviews were undertaken.

Sexual functioning was assessed quantitatively using Sexual Responsiveness Scale,[3] a 24 item self-report measure used to assess sexual functioning: desire, arousal, orgasm, and resolution. The semi-structured interview schedule included open-ended questions about the impact of the illness and its treatment on the sexual relationship with spouses.

The range of ages was 28–73 years old (mean = 52.9). Twenty-five (50%) of participants had attained postgraduate level of education and majority of the participants, i.e., 37 (74%) of them were Hindus. The age of onset of illness ranged from 26 to 65 years (mean = 46). Number of years of survivorship ranged from 1 to 28 years and majority of the sample, i.e., 40 (80%) were diagnosed in Stages I and II.

The results revealed on the Sexual Responsivness Scale (SRS), range of total score can vary from 0 to 16 with higher scores indicating better sexual functioning. The mean of the present study was 2.34 suggesting poor sexual functioning in the survivors. Moreover, out of the 50 survivors, 15 of them refused to respond to the measure for various reasons enumerated in [Table 1].

Emerging data from the interview schedule revealed survivors were comfortable in sharing experiences related to body image issues and emotional impact with spouses. However, with regard to understanding the physiological aspect of sexual functioning or sexual intimacy practiced in nonsexual behaviors, the researcher hit a wall. The participant's responses tended to be “no problem,” “there is no sexual intimacy left” or that “there was initial difficulty after the treatment but its all fine now' or “These questions are intense.” However, when attempts were made to probe for further details regarding the nature of problems, there was a tendency by survivors to stonewall these questions. The nonverbal behaviors included tendencies to smile or laugh when asked questions about it or maintain a stoic expression which made it further difficult for the researcher to probe for both ethical issues and the rupture of rapport that had been formed.

These findings throw light on various difficulties encountered in the field when studying sexuality as an area of research. Scholars have tried to understand it using anthropological, psychological, and religious undertones to it.[4] Several questions could be raised to help better understand it: (a) was there a gap between terms used in the questionnaire such as “climax” or “orgasm” and the participant's knowledge about meanings of these words? (b) Could it be associated with breast cancer itself wherein participants are required to discuss stigmatizing issue of cancer and taboo of sexuality? (c) Could it be a form of denial used by survivors to help avoid emotional discomfort which may be associated with talking about it? (d) Could it be a function of the belief that ideal Indian women are sexually passive and expression of sexual dissatisfaction would connote that they were “bad women” by asking for more sexually? And lastly, (e) is there a belief that sexual instinct is a necessity for procreation and therefore, it becomes a redundant aspect of their lives after the illness? Other research has also focused on discussing sexuality in the clinical setting and the barriers involved in effective communication between the patients and the medical specialist.[5]

In light of these findings, future research is needed to enable full understanding and appreciation of nuances of sexuality as manifested in India. Study designs need be of a mixed-method and address issues of taboo associated with sexuality, how religion is perceived to have an impact on it and how Indian conceptualization of gender behaviors have a role to play in its expression.